Hi im new here and have recently had a diagnosis of Hughes syndrome and sjogren's syndrome.

[white1432012]

I actually thought I had lupus as I have many signs of it and have had 2 positive blood tests for it although I haven't actually had a diagnosis for that which im a little confused about, does anyone else have symptoms of lupus with the Hughes (aps)

Thanks for your reply in advance

Caroline x

[Manofmendip]

Hello White and welcome to our forum.

You have a diagnosis, which has the most difficult thing to get for many of our members.

I'm glad that you have seen Prof Hughes too, I have seen him several times.

Where are you from in the UK? I am asking in case you are in the West Country, as we have an APS West group meeting on Wednesday in Bath.

Best wishes.

Dave x

[white1432012 in reply to Manofmendip]

Hi Dave, thanks for replying. I'm from Lancashire wonder if there's any meetings around here? Prof Hughes was fantastic and i'm really glad I went to see him. If you don't mind me asking have you been diagnosed yet?

Caroline x

[Manofmendip in reply to white1432012]

I was diagnosed in 2002 by a neurologist in Bath and then sent to a haematologist who sent me to Prof.

Kate at the the HSF may know of groups in your area.

Dave xx

[white1432012 in reply to Manofmendip]

Great I'll ask thanks x

[Manofmendip]

Hi Loiuse.

I look forward to seeing you at a future meeting.

Dave xx

[white1432012]

Hi Louise-a,

Thanks for your reply, I too have thyroid problems do you mind me asking how yours affects you? Also im only taking heparin to thin my blood, how does plaquenil help you? I also have the rash in sun and its really irritating and i get unwanted attention from it too but my doctors don't seem to be able to give me anything to help is there anything you know that helps this?

Thanks

Caroline x

[white1432012]

Hi Louise,

Thanks for replying. Which suncream is it? I could do with trying it. X

[white1432012]

That's great thanks x

[MaryF Administrator]

Hi there and welcome, I have several things, alongside Hughes, and this is the right place to be fore advice and support. Glad to hear that you are getting to the bottom of it all. Mary F x